Interstitial Cystitis Expert Forum
New Concerns About Severe IC
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New Concerns About Severe IC

I am a female age 52 yrs old, 6 yrs ago I was DX with Bladder Cancer and scared out of my mind. My PCP and OBGYN had me believing I was going to have to have my bladder taken out and have chemo treatments. All this was DX before any test other than testing postive for chronic hemturia in my urine. I finally got to a Urologist and he nearly killed me. He did do a cysto and discovered that my bladder was covered with a "cottage cheese" like substance. Thank God It was not cancer. However, I stayed with him and he treated me with bladder instillations 3 x's a week. I was to the point where I could no longer hold any urine and was unable to walk.  I don't blame the doctor, he did his best to help me and was so very kind and understanding. I did find a wonderful Urologist who was just learning about IC and we worked together for two more years. He got me to where I can now at least walk  some and sometimes I have a 4-6 week "remmssion" we call it. I have Hydrodistention's with Chlorpactin Instillations every 6 months. I go weekly for "Soothing Bladder Contails"  my concern is this, does anyone know how IC will progress as I get older? I have had other medical problems and I wonder if the IC is not linked in some way. I currently have an Interstim and a Neuro Stimulator implanted. We were hoping this would control the urgency  and pain enough to stop some of the pain meds. However this was not the case. My other concern is what is the medical field doing to learn more about IC and the chronic pain that goes along with it?  Will there ever be a time when I will have any quality life? One could say I am home bound and have no life. IC effects the entire family and there should be some way to allow family members to understand that IC is in fact a serious illness. Family functions are out of the planning and one can forget about trying to plan a vacation. How does one learn to live with chronic pain?  Thxs, Lena1957
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Hi, you obviously have a difficult case of IC. Dispite hydrodistentions every 6 months, bladder instillations and coctails, plus an Interstim you still are in pain with significantly reduced quality of life.  I assume you have already been tried on Elmiron and pain medications with no or little improvement. It sounds like your dominant problem is the pain. Unfortunately you are in the group of patients we call refractory IC, that doesn't respond to standard therapy. Many of these patients have other pain priblems like fibromyalgia, and irritable bowel symdrome, migraine headaches and food allergies. This is the most difficult to treat IC and options are limited.  You should see a pelvic floor therapist with expertise in IC/pelvic pain to determine if you have trigger points in the pelvic muscles that are triggering pain. Intravesical lidocaine instillations work well in patients with pain and I have a few patients doing at home daily instillations if an initial 5 day course in the office  works.  You should be also followed in a Pain clinic by a pain expert who can review with you your options.  Major surgery to remove the bladder is recommended as an absolute last resort if everything else fails and has multiple possible complications. Do all the above things first, the let me know.  There are some research options currently undergoing clinical trials that may be available in the near future that look promising. There is hope, so hang in there!  Good Luck    
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Thank you for your frankness and understanding. i have all you mentioned and have been in pelvic floor therapist with expertise in IC/pelvic. There awasn't any relief nor did we find any trigger points. I do have UTI's very often and as you know I have the symptoms on going of a UTI. I have a wonderful Uroroglist and Pain Management doctor. We have tried everything from spine injection to stimulators. If it had been FDA approved we have tried it. I have recently started taken Lycrica 75 mg @ bedtime. That has helped a lot with the pain wakn me up @ night. far as the lidocaine instillations, I go three to five times a week for those. My Uro prefers doing these in the office. that way he can keep up with how often I have a UTI. I am on the waiting list @ Chapel Hill for a bladder transplant. Will that help? Who knows but @ this point it is worth the try. Removing the bladder is a choice, but my doctor says the pain will still be there. I will just have to wait and deal with the pain and try to keep the pain meds as low as possible. I know the time will come when we will have to increase them and sooner or later there will be nothing stronger left to go to. I don't know how painful cancer is, but if it's anything like IC? I pray God is with each and every cancer pt.

Thanks, Lena
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509188_tn?1211228331
You need to see  Dr. Robert Evans.  He is a national expert in IC and is currently in Greensboro but will be moving to Wake Forest soon.  He participted in a research trial for patients with IC using a new drug with great preliminary results.  Contact him and see if you can get into a clinical trial before you resort to radical surgery.
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